Glioblastoma - the reality.

[ThisMustBeMyDream]

Following my DF's recent diagnosis of grade 4 glioblastoma, I'm after advice from those who have supported a family member through this.
My main questions are around what changes we will see, and how quickly those will happen (I know it varies, but information from others will help me make sense of it). And what the end will be like. I guess if anyone could share their story that would be the most useful for me right now. Warts and all.
My DF is fit and well ordinarily, and is late 60's. So this has come as a total shock. His is in his left temporal lobe. He will be starting radiotherapy soon. But what after that? Will we have a period of normality before he becomes ill?
I'm really afraid of the unknown. I think being prepared is the best way for me to cope through this. So I'm here to try and get as prepared as I can be on what to expect. I can't ask any of these questions at his appointments as him and his wife simply aren't ready to find any of that stuff out. But I need to. I need to know what the future could be like. This is all unknown territory for me, and I'm an only child. So I have to keep my shit together. Being prepared will help me be less blindsided going forward.

In addition, on my dads hospital stay - I had to ask the doctor to put it in plain words for my stepmum... she was using the "we can fight this" talk and saying no dnr etc...... the doctor - a wonderful lady (in France - they seem a bit more "in charge" over there) - was absolutely horrified and firmly said "NO, he is dying. And if his heart stops he will not be resuscitated, it will be a mercy" which was exactly right.

Sorry you are in this position OP.
I agree with posts above, my mid 50’s mother had 10 days or so of debilitating headaches, vision problems, balance problems, before diagnosis. She had surgery and a bit of radiotherapy but she couldn’t tolerate it.
Was probably 18 weeks from diagnoses to death, shorter than they’d predicted. I wish now that she’d not been put through the operation, radiotherapy etc and all the horrible hospital appointments etc that that involved. With hindsight these decisions are easy!
It was brutal, but now many years on I feel that perhaps it was better than years of suffering with old age and dementia, she would have hated that.
Wishing you strength. X

I’ve thought about your post all day, and had a little cry putting my make up on this morning thinking about you so thought I would share my experience.

My mother died of GBM in 2020. I’m medical and so when we were told what it was, I knew what was coming and in many ways that was worse than the actual experience. Some radiotherapy, some chemo with complications but ultimately, it’s a runaway train that’s nearly impossible to stop. She did ok with 11 months from diagnosis to death.

Experiences will all be different; for me I had one little kid who was terribly confused as to why their favourite person was so suddenly changed and different. I was newly pregnant and the world was going to hell with Covid. I took lots of time off work to care for my mum, and have no regrets about any of the time we spent together, even the really rough stuff.

In the end, there was lots of sleeping, a bit of confusion and disorientation, some mild seizures, unsteadiness on her feet but not much pain, some moments of lucidity and a sense of gratitude from us all that we were lucky enough to have had her at all. Her death was really peaceful and dignified, and so many people didn’t get that in 2020.

I’m so sorry this is happening to you. At the time, it derailed my whole life. I won’t ever be the same version of myself I was then. But still happy, still fulfilled and still can enjoy things, even though I miss her like I’ve lost a limb, every day. Sending you lots of love and strength.

My Dad died of this. He was diagnosed in the September and died the following August. He did not respond to treatment - chemo & radiotherapy. He deteriorated quickly. He would fall and need assistance walking in the end. In the final few months he was bed bound and passed away at home downstairs. Had to put a bed downstairs. Couldn’t walk. He developed Cushing syndrome as well from all the steroid meds. He was aged 58. It is so heart breaking. His personality changed, and I don’t think he recognised me in the end. Yes, lots of sleeping in the end. He wasn’t awake for long during day. My mum was his carer. I am so sorry OP - nobody deserves this at all. It’s so very traumatic. The nurses who cared for him were wonderful. I was there when he died, they injected him with drugs. Lots of love to you.

My dad died from this 3 years ago, he fell a couple of times then started struggling to keep his balance when walking. I think it took about 4 weeks of scans & hospital referrals to get a definite diagnosis by which time he couldn’t walk any more. He was given 6 months when he was diagnosed but died 2 weeks & 2 days after he was diagnosed, the last week he struggled to communicate at all.

Get all the awkward conversations out the way now, find out how he wants to be cared for & make the most of every day that you can.
MacMillan, Mariecurie & the brain tumour charity were all brilliant & helped Dad to stay at home until the end.

My DM was diagnosed in 2020 just before lockdown so terrible timing. DF died from prostate cancer in 2019.
DM didn't want to know how long she had left. In some ways I think she never really accepted her diagnosis. The tumour was inoperable but she did have oral chemo.
She died in 2022, about 2 years after diagnosis, so longer than many people's relatives on here. She was 74.
The last 4 months were traumatic. She didn't always know me when I visited in hospital. I remember her asking me where her parents were....
I still find it difficult to remember her as she was before she was ill.
I am sorry you have to go through this.

I’m so sorry OP.
My mum died from GBM in 2012 when she was 64. Reading these experiences I’m realising we were very lucky - mum lasted nearly 4 years after her diagnosis.
She had migraines for a while, but I knew something was very wrong when one day my mum couldn’t remember what I’d said to her two minutes before. They did an MRI that day, found a mass, transferred her to a different hospital for more scans & was diagnosed the next day - this was September 2008.
Her tumour was the size of lemon but located at the back of her brain near her optic nerve. This was followed by chemo & radiotherapy.
Despite how gruelling it was, mum responded well & was classed as in remission in summer 2011.
Up till then my mum had returned to work, drove, we went on holiday etc.
Then in early 2012 she had an eye test done were changes were observed. The tumour had started to regrow. She had a second operation, which was successful & she was discharged. But then a few weeks later she had a fall in Waitrose & was taken to hospital. They found Fluid had started forming on her brain & she had to undergo another operation to fit stents to drain it off. That worked, but the Drs said she was then too weak to undergo further chemotherapy, at which point we knew things would go downhill quickly as without chemo the tumour would regrow.
This is basically what happened. She stayed in hospital till March 2012, & then went into a local care home for palliative care.
She was fine in her head but weak, & reduced movement etc. But I would see her everyday & take her dogs in to see her.
Then in July 2012 she caught flu & we thought she was about to die. She recovered but unfortunately never regained consciousness after that. She finally died at the end of August 2012, nearly 4 years since she was diagnosed.
Im so thankful we had those extra years, but it’s a horrendous disease & traumatic in many ways.
And unfortunately it’s not as rare as people think - I know several people who have had GBM or other brain tumours, & it’s so frustrating that treatment hasn’t advanced much.
I agree with others though - if you can, get as much done as possible early on. Wills, POA, funeral wishes, financials etc.

I’m sorry to you OP and everyone on this thread who has been through GBM.

In 2022 my DP (mud 50s) had a seizure at work one day and was rushed into hospital where they diagnosed a GBM. Unfortunately it was too advanced to treat and he quickly lost the ability to walk, speak and became incontinent. It was six weeks from diagnosis to him passing away. He was in a lot of pain so on morphine and stayed in hospital. The most distressing thing was not being able to communicate. It was such a shock as he had no symptoms before the seizure and was fit and healthy.

It was a horrific time and so utterly cruel. I’m very sorry if this makes for difficult reading OP.